A controversial scheme to collect and share patients’ NHS data must be halted because of privacy concerns, Labour is urging the government.
The party echoed medical groups by protesting that people are being kept in the dark about the use of the information on treatments, referrals and appointments over the past 10 years.
The data will be anonymised and its collection will “save lives” by helping to develop cures for serious illnesses, such as heart disease, diabetes and cancer, health chiefs say.
But there is criticism that it can then be shared with third parties – as well as a lack of public awareness that patients have only until 23 June to opt out.
Now Labour has written to the health secretary Matt Hancock and to NHS Digital, the body directly responsible, urging them to slam on the brakes.
“I echo concerns from across the health sector that the lack of transparency on which organisations can access this personal data is deeply concerning,” said Alex Norris, the party’s public health spokesperson.
“Patients need to be made fully aware of which of their data is available for access and by whom, and so I have written to NHS Digital asking them to pause their upcoming GP data collection until these questions are resolved.”
Last week, the British Medical Association (BMA) condemned the government’s explanations of the issue as “completely inadequate, causing confusion for patients and GPs alike”.
“People need to fully understand what this programme means and crucially, how to opt-out of their data being shared, if this is what they want to do,” Dr Farah Jameel said.
“Family doctors have a duty to their patients and have their best interest at heart – so are understandably hesitant to comply with something that patients may know nothing about and that they themselves do not fully understand, even if this is a legal requirement.”
But an NHS Digital spokesperson said: “Patient data saves lives. We could not have delivered the Covid-19 vaccine rollout if we had not used data to ensure we reached the whole population, prioritising them in the most effective way.
“The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.”
The medical histories of more than 55 million patients are set to be put into a database available to academic – and commercial – groups, for research and planning.
The records will be scraped from every GP practice, under a plan only announced by Mr Hancock in April, on the NHS Digital website and on flyers at surgeries.
The deadline for opting out is 23 June, requiring patients to complete a form and give it to their family doctor.